The Dysferlin Registry
The Dysferlin Registry is a free patient registry exclusively for individuals who have been genetically diagnosed with dysferlinopathy through the identification of mutations in the dysferlin gene. The Registry serves as an international recruiting tool for dysferlinopathy and general LGMD studies and trials. Members of the registry have the opportunity to connect with other patients as well as the Jain Foundation team. Inquiries and general questions about dysferlinopathy (LGMD2B/R2/Miyoshi Myopathy) are welcome!
Please see the registry page here